An overview of Heart Transplanation
Heart transplants in HCM are not common and are needed in about less than 6% of the total HCM population. There are a few subsets of the HCM population that may require transplant they include, those with severe systolic dysfunction (heart cant pump well), those with severe diastolic dysfunction (heart cant fill well), or those with severe and unstable arrhythmias.
Systolic dysfunction is defined as the heart inability to contract properly which is measured by a decrease in the left ventricular ejection fraction to below 40% in most cases.
Diastolic dysfunction is defined as the hearts inability to relax which is also measured by a decrease in ejection fraction in HCM, normally in the area of 45-55%. This is also referred to as "preserved ejection fraction" as a normal ejection fraction can be between 55-65%, and a normal HCM ejection fraction is 65-75%.
Unstable arrhythmia's (normally uncontrollable ventricular arrhythmia) that requires transplantation are very rare, however several HCMA members in the past years have been transplanted for this indication.
In a recent publication a review was done of all heart transplants done in the USA to see how many were for HCM, it was about 1% (n=303, 1%) and non-HCM (26 403, 99%). However no genetic testing was required to know if some of those who did transplant were HCM and developed systolic dysfunction and thereby were not counted as HCM's. The good news for HCM patients is the survival rates post transplant were better then the other groups . The 1-, 5-, and 10-year overall transplant survival for HCM patients was 85%, 75%, and 61%.
Understanding Heart Transplant
A heart transplant is when a diseased heart is replaced by a healthy human heart from a donor.
Because there are not enough suitable and available donor hearts, not everyone who could benefit from a transplant can have one.
In 2014/15 with the data ending on 10/31/15 there were 4546 heart transplants at 150 transplant centers around the United States. UNOS reports that in that same time frame there were 16,500 patients who needed transplantation.
Who might need a heart transplant?
A heart transplant may be considered if you have severe heart failure. If your condition is serious and other treatments are not managing to improve things or control your symptoms, your cardiologist may send you to a heart transplant center for a transplant assessment.
How do I know if I'm eligible for a heart transplant?
Your assessment will determine whether you need a transplant and whether you are suitable for one. Based on your assessment, you may be considered:
- suitable for a transplant, in which case you will be put onto the transplant waiting list. This means you could be called for a transplant at any time.
- suitable for a transplant, but the consultants do not think your condition is severe enough to warrant being put on the waiting list. If this happens your case will be reviewed regularly. If your condition gets worse, you will go on the waiting list.
- in need of further investigations or treatment. If your condition changes you can be assessed again.
- an unsuitable case for a heart transplant. This could be for a number of reasons. The transplant team will explain why you are not suitable and discuss how you can be treated further. You can also be referred to another center for a second opinion.
If you are considered suitable for a heart transplant you will be added to the transplant waiting list. Once you are on the list, a suitable heart may come along within a few days or it may take many months or even years.
Unfortunately, suitable hearts do not become available for everyone and only a margin of people receive the heart transplant they require. In the US, adults and children can wait over a year for a transplant based upon factors such as blood type, body type and BMI (Body Mass Index).
What happens during a heart transplant operation?
It’s natural for you to feel excited, emotional or anxious about your surgery and life afterwards.
Remember that a transplanted heart is no more than a new pump - it does not change your personality or behaviors.
A heart transplant operation usually takes between four and six hours:
- At the start of the procedure you’ll be given a general anesthetic.
- The surgeon will make a cut in your breastbone to get access to your heart. You will be connected to a heart-lung bypass machine which makes the blood circulate around your body.
- Your surgeon will then work on transplanting your new heart.
- When this is finished, they will start your heart beating again. When you heart begins to take over pumping and your condition is stable, the heart-lung machine will be turned off.
- The surgeon will then close your breastbone with wire, which will stay there for the rest of your life.
What happens after the transplant?
Most people leave hospital within as little as 1 week but on average about four weeks of the operation, but depending on your condition, you may need to stay in hospital for longer.
In the first few months after your surgery you will need to spend a lot of time visiting the hospital – you might even need to stay near the transplant center. Your transplant team will talk to you about practical arrangements for after your surgery.
Although you will be weak after the operation, recovery can be very quick. It is important to build up your level of activity gradually. You should avoid activities involving lifting and pushing until your breastbone is fully healed, which can take up to three or four months.
Once you feel fit and able, you can start doing things like light vacuuming or light gardening.
What is life like after a heart transplant?
Once you’ve recovered from surgery you should be able to return to a wide range of activities including driving, holidays and physical activity - some people are even able to go back to work.
You will need to take a number of medicines, including immunosuppressants, for the rest of your life. Without them your body would rapidly recognize your new heart as ‘foreign’ and try to reject it. This type of medicine can have side-effects which your doctor will discuss with you.
Many people who have had a successful heart transplant go on to live long and healthy lives. Over three-quarters of heart transplant patients live for over five years.
It is important to remember that while you no longer have HCM, you have exchanged one set of medical issues for new ones, managing your new heart is a responsibility and it must be taken as seriously as you took your HCM.